The Adventures of a Sleepy Woman

How Xyrem Probably Works-Good Info from a Smart Girl!

2010-07-05T20:07:00.001-04:00

I took Xyrem for Narcolepsy about 5 yrs ago. I took it for I think about 6 months, although I may be wrong because those months are quite cloudy. Other than the face swelling, major anxiety, bloody hangnails, head thrashing, wanting to die and not being able to breathe through my nose, it was a pretty good experience...or not.

Over at the Zombie Research Institute, one of my favorite websites, Heidi L. has some great information about millions of things having to do with Narcolepsy and so much more.

You can read her section entitled "How Xyrem Probably Works" here and it is most interesting. She does some serious research, and all of her stuff over there is so worth taking the time to read. So go read it. Save your brain from Zombietude.

In other very important news:

Patchy and Pudgy, the pigeons that

live on my balcony had babies!

They are so ugly that they are cute!!

They are so tiny! Don't you want to just squeeze them!!

New Journal Article - Narcolepsy Treatments...Very Interesting

2010-06-24T18:55:00.001-04:00

Hola everyone!

While perusing the curehunter.com database, I found a new article to be published this July, written by Stanford's own Christian Guilleminault, Mia Zaharna, and Alex Dimitriu.

The reasons that I find it sooo interesting is that it describes Narcolepsy as a neurodegenerative disorder, instead of the usually described neurological disorder. Also, there are some new treatment options that they mention that I had not heard of yet connected to Narcolepsy. The abstract states:

"For each of these treatments, we evaluate risks versus benefits of treatment, and proposed pharmacologic mechanisms of action. We conclude with a review of new treatment approaches, including thyrotropin-releasing hormone (TRH), histamine agonists, immunotherapy and hypocretin replacement therapies."

Have any of you heard of thyrotropin-releasing hormone (TRH) therapy?

You can access the abstract by clicking here. Please let me know if you have any insight into this abstract or any comments would be appreciated. It seems to me that it is a pretty important step in introducing some optional treatments for Narcolepsy.

And by the way, it is just me, or is it a new thing to describe Narcolepsy as a "neurodegenerative" disorder?

Ok, the dogs have nothing really

to do with Narcolepsy, but I love them!

This is Jack and Kenny my sister's dogs. :)

Depression in Narcolepsy: High Probability

2010-05-26T16:24:00.006-04:00

Hola everyone! I have been looking for more and more info regarding Narcolepsy and Depression. It seems from what people are searching for, this is a popular search, and so I am trying to find more interesting resources to give. Narcolepsy and Depression, to me go hand in hand, and I think that most people with Narcolepsy already know this, right? But it is interesting to find studies that give us percentages and figures. Well, at least it is kind of interesting to me:)

Here is a link to a study done at Lesley College way back in 1996. I do, however, think that it is quite relevant today. Please click here to read it, or you can read the abstract below.

Depression in narcolepsy: concomitant or constituent?
LINDSLEY G, CRAWFORD B Sleep Research 1996; 25: 279. Lesley College and Quintiles/Benefit Research

Abstract:
According to recent studies, the comorbidity rate of narcolepsy and depression is estimated to be between 30-52%, as compared with a depression prevalence rate of 8.1% in the general population. Our current study provides further support of the significantly elevated comorbidity rate of narcolepsy and depression, and extends these findings. Subjects were 22 men and 44 women between the ages of 17 and 76 (mean=49ñ15.24) who completed a survey intended to assess the financial burden of narcolepsy. Estimated age of narcolepsy symptom onset was 20 yoñ10.64. The mean age of diagnosis was 34 yo ñ 11.49 years, with a mean lag of 14ñ11.53 years from estimated year of onset. According to the subjects' retrospective reports, 46% carried an accurate diagnosis of depression prior to their diagnosis of narcolepsy. Strikingly, 56% of the sample continued to carry this diagnosis during this past year. There was also a high comorbidity with diagnoses of anxiety. 32% carried this diagnosis prior to identification of narcolepsy, which increased to a rate of 35% within the past year. Overall rate of moderate to severe mood disturbance was 58% of the sample pre-narcolepsy diagnosis, which stayed essentially the same, 57%, during the past year.

Looked at separately, the five subjects in the sample < 25 yo had a lag of 0-5 years from onset to diagnosis. The data showed essentially the same trends with respect to associated diagnoses of depression and severity of mood disturbance, except that anxiety frequency increased rather then remained the same during the past year.

With respect to co-relationships among potentially relevant variables, severity of depression was independent of reported severity of EDS, cataplexy, disruption of school or work life, and medication. As graphed below for the current year data, however, there was a striking relationship between severity of depressed mood and presence/absence of anxiety diagnoses, with anxiety diagnoses increasing as depressed mood increased. Severity of depression also had a similar relationship with difficulty focusing and concentrating (cognitive disturbance).

In conclusion: (1) The probability of depression in association with narcolepsy is very high; (2) Formal diagnoses of depression are significantly related to diagnoses of anxiety; (3) Severity of depressed mood appears also to be related to degree of cognitive disturbance; (4) Depression increased rather than decreased across the life span in these subjects whereas anxiety increased in our small sample of young people but decreased moderately from prediagnosis to the current year in the total sample; and (5) that there was no obvious relationship between subjectively reported severity of depressed mood and severity of EDS or cataplexy, degree of disruption of school or work life, or type of medication. These data reinforce how critical it is to address affective disturbance as well as the primary symptoms of narcolepsy when treating narcoleptic patients. In addition, the high comorbidity rate of depression with narcolepsy, even when EDS and cataplexy are more or less under control, raise the question of whether depression is actually a constituent rather than merely a concomitant of narcolepsy.

Research supported in part by Cephalon, Inc.

------
Interesting? When research is supported by drug companies, I usually am a bit skeptical, but this study isn't surprising to me, nor does it seem unlikely. What do you think about it? Leave a comment if you like, I would love to hear your thoughts on this.

Until next time,
Via Con Dios,
Ja:)

Narcolepsy and History...Doctors Are Not Always the Smartest People...

2010-04-10T18:31:00.007-04:00

I have recently had the opportunity to read some medical journals and reviews about Narcolepsy dating back to the late 1800's. I realize that we know so much more in today's world, but damn!
There is absolutely no doubt that medicine in the 1800's and early 1900's was frequently scary as hell, just take a look here and the so scary, I could pee my pants selections here, at the "Dr. Bonkers Institute", to get the picture.But back to Narcolepsy...

I was perusing the 1897 book entitled, "Sleep: its physiology, pathology, hygiene, and psychology." by Maria Mikhailovna Manaseina and not only did I vomit a little while reading, but It so sadly reminded me of the attitudes of so many people during those times, and how scary it is to think that there are probably some people that actually have similar attitudes and beliefs today. Below is a selection from this old piece of doo doo, "medical" book...

Oh no she didn't! Ok... it's 1897...we didn't know much then...blah blah blah...HELL NO! I don't care what year it was, she actually used the word "always". Read it again please...She says people with Narcolepsy always come from lower and least developed classes or from families with "nervous or mental disease". That is not a medical statement, that is a stereotypical, stupid statement of idiocy. Man, all I can say is that I am so very thankful that she was not my doctor! Thank you Jesus!

You too, can also read this mind numbing "medical" book online for free by clicking here. There are so many statements in this book that are grossly racist and just plain nuts. But sadly, it is history.

I am a believer in knowing the truth about history and learning from it as well, but sometimes, well, actually, a lot of the time, it really is a hard pill to swallow. So many throughout history suffered and fought for freedom, and were treated in ways that we could never imagine. We've got to honor those who suffered and paid the price for our freedom today, and pray for those that still suffer unimaginable circumstances even today.

Medical issues are just one piece of the pie. All I can say is that I feel like one of the most blessed people in the world.

From all I can find, Maria Mikhailovna Manaseina was a noted Russian physician and scientist that studied sleep. If she were here today, I would have to tell her to kiss my Narcoleptic ass!!!

History lesson concluded.

Narcolepsy as an Autoimmune Disease

2010-04-07T16:44:00.008-04:00

Since the discovery that Narcolepsy is most likely an Autoimmune Disease, I know I have been combing the web for information on new developments and articles discussing this topic.

I found a link provided by Medical Planet, that offers a free download book (pdf) called "Narcolepsy and Hypersomnia (Lung Biology in Health and Disease)". One of the editors is Emmanuel Mignot, so I am thinking that it might be a good read. Here is the description of the book from the blog page at Medical Planet,

"This is the first and only guide to discuss narcolepsy as an autoimmune disease. Compiled by an international group of more than 40 authors, this reference book supplies an engaging and comprehensive review of the major topics and key issues associated with narcolepsy and hypersomnia. Spanning the latest advances in the field, this source covers current diagnostic procedures, genetic developments, explorations of animal models, new definitions and criteria, and improved epidemiological surveys to reflect the explosion of research in this evolving science."

The book appears to be published in December of 2006. I have downloaded the book but I have not yet had a chance to read it yet. It has 736 pages!! You can download it HERE.

With the download, there are some other files that come with it that appear to be links to other services and possibly material that the website might be trying to sell, but you don't have to open them unless you want to. My computer did not detect any virus or malware with this file download, but of course, make sure you check it on your computer, just to be safe!

I hope that this will be useful to some of you, and the website the book came from looks pretty interesting too, although this was my first visit.

If you get a chance to check it out, please leave a comment!

Go Easy!
Ja

This Sleepy Woman Hasn't Had Too Many Adventures Lately!

2009-10-28T17:15:00.006-04:00

Hola everyone reading!

I haven't written in awhile, and I am sorry for that, if anyone was wanting to read here. My dog died Aug 10th, and it has been a little harder than I thought it would be. He was 14 years old, but very young acting! In the last year he got Diabetes and it was really hard on him. He also went blind (overnight) this year, but adapted so well, and did a great job finding his own way anywhere.

I loved him like family, and after having him for 14yrs, he was my little brother. He died in his sleep at the vet. They initially had to give him lots of phenobarbatal because he was having seisures that wouldn't stop. By the next day, he still was having them in his sleep and died.

I want to write here again, I have been reading a lot, but it was just hard to write anything without losing it. As many of you already know, stress really messes with your Narcolepsy too! I am hanging in there, and I hope that all of you are too. For any of you that pray, please pray for my family and the grief process. We are doing ok, but without God, I dont even want to think about where I would be!

Thanks Mucho!!

This is my dog Leo. :)

Alternative Treatments for Narcolepsy? Be Careful! Part B

2009-07-29T02:58:00.012-04:00

Hola all.

My last post was about these websites that seem to be popping up all over the place and tout alternative therapies for treating, healing and yes even "eradicating" Narcolepsy altogether.

I started talking about one of these treatments called "Corsatax". Their website claims,

"Unlike other Narcolepsy products which are slow or ineffective, Corsatax has the unique ability to provide long term support in a relatively short time through an easy one-a-day pill regimen. In recent years there has been an increasing interest by medical researchers, practitioners and also the general public in natural plants and herbs as sources of medicine. All pharmaceutical companies are now finally admitting the fact that plants and herbs are by nature endowed with substances that have incredibly powerful healing powers."

I found their statement very general and not really informative about this one-a-day pill regimen. They list absolutely no links to studies performed on their product. In the ingredients section, they do list the "properties" of each herb used, but site no authority or mention where the heck they got the info.

As mentioned i my last post, I wrote them via web form at their site to request more info on and studies that may have been perform, and expressed my interest in trying the product. I have not at this point received any reply to my request. Surprise!

And here is where it becomes a real hot mess;

By doing a simple (ok, a little more than simple) search on some phrases they use on their website, this "company" seems to have more than 100 other websites almost completely identical to the "Corsatax" site. yep, there's:

Ongrotax: A unique Gonorrhea product
Sintatex: A unique Tinnitus product.
Lipratax: A unique Oral Leukoplakia product.
Meslarax: A unique Inclusion BodyMyositis product.
Glocatax: A unique Glaucoma product.
Dermatax: A unique Dermatomyositis product.
Gemlarax: A unique Polymyalgia Rheumatica product.
Nebralex: A unique Boils product.
Vomorax: A unique Cyclic Vomiting Syndrome product.
Kidnatrex: A unique Renal Failure product.
Myorex: A unique Cluster Headache product.
Cervorax: A unique Cervical Spine product.
Gravitax: A unique Myasthenia Gravis product.
Vegarax: A unique Graves' Disease product.

And about a kagillion more...(do these people have any conscience?) Do they just sit around making up names....?!?!?

Each website is almost complete identical other than the name of the product, and some of the ingredients. It's is a damn shame.

The "company", Botanical Sources, is supposedly in Italy, and I imagine it has a front yard full of unicorns, and rainbows with pots of gold at the ends. It may as well, because that address is nonexistent, or perhaps and PO box of some sort.

I am sorry to make this post so long, but there is more...Here is the HOT HOT mess section.

At the website "Rip-off Report", a site where consumers can publish complaints about purchases or fraudulent activity, There are a few interesting complaints about the lovely "Botanical Sources" co. Click here to read from the website, or here is a snippet of the complaints below;

From the site, a customer writes:
"I ordered an herbal product called Voltarax from this company not knowing they were located in Italy.My order took almost a month to reach me. When it did arrive I noticed it was mailed from Pakistan. The packaging does indicate that it was made in Pakistan. Had I known upfront that I was ordering a supplement that was made in and mailed from Pakistan I would not have ordred.
Botanical Sources is using a company CCnow as a 'retailer' in the US to process payment information. Buyer beware."

And...
"This web site preys on people looking for natural cataract relieve. It almost seems like a legitimate site until you look for a telephone number to ask questions and there is none. Their address in Italy does not exist. The web page does have a false area to submit your name, e-mail address and phone number stating that they will get back to you immediately. Of course they never will. It claims of natural herbs from India known to heal cataracts. The frauds call their product Secarx."

Well, I guess I am the bearer of bad news. I wish that they were legit. I knew they weren't, as most of you did too. We have to be careful! Always check with other before wasting your hard earned bucks on crap like this. I just wish I could figure out how to take them down!!!!!

What do you all think about this crappalicious crap!!!????? Let me know, maybe we can get the word out, or form a coalition to get these meanies together and .....and pinch them really hard ...or something....maybe make them take one of our natural remedies...called Crappheadtax. Kinda catchy, huh...

:)

Alternative Treatments for Narcolepsy? Be Careful! Part Uno

2009-07-19T15:42:00.009-04:00

(This is kind of a long post, but I hope it may be of great use to some of you out there! I certainly am interested in knowing all I can:)

I don't know anyone that wouldn't be ecstatic to find a natural way to make Narcolepsy go away or even something that would help reduce Narcolepsy's symptoms. I know I am one of those willing to try any safe natural treatment. Hey, If it doesn't work for me, no real loss, right? At least it would be a learning experience. And, as the saying goes, what works for some, may not work for others. (I think that is a saying...but oops, if it is not)

Those who know me know I am a researcher. I look for news everyday, regarding new information about Narcolepsy, and read way to much, most of which is written in a language that I understand, at best, only a bit, due to the medical terminology. (Why didn't I become a doctor or geneticist...:)

So with that being, I have always noticed some "natural cures" that pop up on the web from time to time claiming that Narcolepsy is over, done been cured, that is, with the help of their well studied, miraculous mixture of herbs, that completely kick Narcolepsy in the butt! Yeah, right...

I have tried to find information about the companies that have these websites that are strangely similar in many ways. I have tried to find out if anyone has tried any of them....can't find a soul, except for the testimonials of those on the products website. So, as much as I had ever wanted to just try them, my conscience just cannot allow me to. Below I gathered some info from each of these sites for your viewing. I also have written to two of them, which I have below as well.
My personal comments are in RED so it doesn't get confusing. Here it tis...oh ps. I didn't list the website addresses. A quick Google, and you'll find them fast if needed.

Treatment name: Corsatax

Claim from their website: "Unlike other Narcolepsy products which are slow or ineffective, Corsatax has the unique ability to provide long term support in a relatively short time through an easy one-a-day pill regimen. In recent years there has been an increasing interest by medical researchers, practitioners and also the general public in natural plants and herbs as sources of medicine. All pharmaceutical companies are now finally admitting the fact that plants and herbs are by nature endowed with substances that have incredibly powerful healing powers."...uh....this statement actually has nothing to do with their unique product! duh.

Cost: 60 tabs=65.00 90 tabs=95.00

Guarantee: "After placing your order, if you believe for any reason that Corsatax is not suitable for you or you do not find it meeting your health expectations, you have nothing to worry about. All you have to do is to send us back the unused portion (or the empty bottles if you have used the whole product) and all amount that you have paid us would be refunded immediately without any delay. It is completely up to you if you want to give a reason as you will not be asked for any. This guarantee is valid for 60 days from the date of purchase, thus allowing enough time for delivery to your door and to experience results."

Company: Botanical Sources Via Canova 24, Suite # NR 320 Roma 00186 Italy Ok, they have a guarantee, sound to good to be true? Me thinks so... They provide NO studies done on the product, but they do provide links to studies about natural plants being useful in medicine, as if they think the average person doesn't know that that has already been known since the beginning of time. errrrr... Since they provide no evidence or real info about their product, I used their contact form to write them this letter:

I wrote:

"Hello, I am interested in learning more about your treatment. Are there any specific studies that have been done using Corsatax? I am eager to read these type of studies, published or private. I look forward to hearing from you. Thank You."

I will update with any additional info I receive. I hope they get back with me with great proof, I really do. But my realistic mind tells me they won't. I hope I am wrong. Until then, I would advise anyone not to jump into this one. You may never get your money back and they list no proof of their product working, with the exception of their overly generic testimonials. Darn!

UPDATE: As of April 15, 2010, I have not heard anything from this company...Surprise!

If anyone out there has tried this product, I would love love love, did I mention, Love to hear from you. I have always wanted just to try it and see what happens, but I just don't have the money to take that chance.

Oh, I have broken this post down, so my next post will be about another company similiar to this one, with another product aimed toward knocking Narcolepsy on it's proverbial butt. :) Thanks everyone for reading my posts. I love ya all!

Genetics Traits, and the Most Genetically Annotated Human on Earth!

2009-06-26T22:04:00.003-04:00

Click here for one of the most interesting articles on how genetic traits can be analyzed. This author of the article has had 5094 traits analyzed! A world record, and an amazing story.

Narcolepsy - poetry

2009-05-26T03:48:00.001-04:00

I woke up this morning
"2:43" said the blazing red lights
About four hours before my alarm
Usually goes off and slaps me awake...

I woke up this morning
Sat straight up in my bed
All bright-eyed and bushy-tailed like they say,
Rubbed my crunchy eyes and stared out my window
And into the slow blackness of night...

Still and cold and deathly quiet
Nothing moved, not even the trees,
Not even the clouds,
It was as if time had stopped, and I
Was the only one left behind, and it felt like

"The ship leaves in five minutes"
And I had slept through it all-- the megaphones, the shouts,
Even the sirens in the distance,
I missed the exodus, the passage
Again...

But when I woke up this morning
I put on my suede slippers,
You know them, the fuzzy ones that makes me shoot sparks
And I shuffled off into the dark kitchen
Wondering if I had lost something there
Like cold pizza from the night before...

Casting shadows from the refrigerator
I was hungry but did not eat
I was thirsty but did not drink
I was tired but did not sleep
Because somewhere I swore I heard you laugh...

At least I thought I heard you laugh,
Like fat stormy raindrops on my window pane,
Like blue-white snowflakes pushing February away,
Like a bamboo windchime with its wires tangled...

I woke up this morning
Wishing I could fall back to sleep,
Because my dream made no sense
And there was no one there I could tell it to...

©2006-2009 @rapidograph

Wakey Wakey! People with Narcolepsy

2009-05-24T00:01:00.002-04:00

Hey peeps.

I just got a email from a friend, Chris"Toph4er" reminding me about one of the greatest forums ever. He does a hella job over there at "People with Narcolepsy" so I wanted to mention it here. It may be a forum that you have never checked out yet. The people over there are friendly and love new folks stopping by.

If you like to do the forum thing, this is a great forum to check out. Click here to go check it!

I hope everyone is doing well. And how about that proof about Narcolepsy being an autoimmune disorder! I was really excited to read that, but now I am just crazy to know what that really means for us. Anyone havve any ideas?

Does Narcolepsy Make You Post to Your Blog Less??

2009-04-10T01:11:00.005-04:00

Hola!

I have really been trying to write in this blog on a regular basis. I am guessing that it is quite apparent that I have not been doing such a fantastic job at it :(

My little cutie dog got sick, and it has been tough to deal with, but I am sure It might be most difficult for him. He went completed blind literally overnight. When we got to the vet explained it could be a illness caused SARD where pet go blind rapidly, without know why. Then, that same week he was diagnosed with Diabetes. After that, all sign are pointing to another additional diagnosis of Cushings disease.

My poor little guys has really been through some difficult times lately. If anyone gets a moment, would you please say a prayer for him? Thank you in advance!!

Helloooo! Check Out This Great Narcolepsy Blog Site!

2009-02-15T17:57:00.009-05:00

Good day everyone! I remember a couple of months ago looking at a site that different people had posted some things in a blog type format, about having Narcolepsy. I just checked It out again, and it has a lot more entries from many different perspectives! On the site it states;

"If you've got something to say about sleep disorders

you can say it here. Prose, poetry, photography;

whatever form of expression suits you
best (within reason). Please email your contribution
to (email is listed at the actual site) with the
subject line "We are not lazy". Please include

your name (or a pseudonym), age and location."

Even If you don't want to add to this really cool blog, make sure you at least go check them out!! It is really nice to be able to read about how other people feel, and what they think about Narcolepsy. Just CLICK HERE or up at the title of this entry to check out the blog called "We are not lazy".

Hope you all had a great weekend!

Going Gray Early? Is There a Link to Narcolepsy?

2008-12-17T16:43:00.005-05:00

Narcolepsy is such a mystery. Some people think that it is an autoimmune disease. Check out this article about the connection between autoimmune diseases and having gray hair before the age of 30. Did any of you peeps with Narcolepsy go gray early? Here's the link, let me know what you think, ok?

Gray Hair Before Age 30 May Mean Health Risks...

Have a great day!:)

Long Term Effects of Narcolepsy - What Do You Think?

2008-10-16T20:40:00.004-04:00

I have seen many articles lately about Narcolepsy, and it's symptoms and general information regarding this illness. One of the interesting things, to me anyway, are the differences in opinions about Narcolepsy and how it effects it's target. I have collected some opinions from various websites, and posted them below, with links, to see what you think.

Do any of these explanations seem accurate in your life? How does Narcolepsy effect you? I am so interested in the opinions of others on how Narcolepsy has changed your life. What is different since you have been effected by Narcolepsy?

Here are some snippets from various sites on the subject. The link to the actual website is included. Let me know what you think, OK?

Long Term Effects of Narcolepsy

From the website of Narcolepsy Network - Click here to go to site.
...The consequences of narcolepsy may be many and far reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and efforts to avoid emotions may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed...
----------
The following text excerpts taken from SleepFoundation.org - Click here for the exact page
...The symptoms of (and some of the drugs taken for) narcolepsy may affect your sex life. Sexual problems, such as low sex drive and impotency, may result from severe sleepiness, depression, medications or cataplectic attacks. These problems, especially any resulting from a new medication or changed dosage, should be discussed with your doctor....

...Narcolepsy symptoms can also result in a change or loss of employment, physical restrictions and social withdrawal. Loss of self-esteem, learning difficulties and depression can result...
----------
Below are a few words from the Aurora Health Care site, from an article intitled "In his own words: living with narcolepsy". The whole article is good. You can check it out, click here.

...I've had to make many lifestyle changes. I had to give up my military career and change jobs. I only swim in shallow water. I'm still a heavy coffee drinker, just not three pots a day. I take regular naps, generally after lunch, around 4, and after supper. I can regulate when I need a nap. And by taking naps, I don't have to take as much medication. Since emotions can trigger cataplexy, I have to walk away from confrontational situations or I may fall over...
----------
At the website of Health Central, here is what they have to say about the emotional and social effects of Narcolepsy. Click here to go to the website.

...The patient suffers emotional and social difficulties from the uncontrollable sleep episodes and cataplexy. Studies have reported rates of depression in people with narcolepsy ranging from 30 - 57%. (In the general population, prevalence of depression is 8%.) Studies have shown severe emotional and social dysfunction in all areas, including work, relationships, and leisure activities. One study reported that 25% of men with narcolepsy suffered sexual problems. Some experts believe that the psychological and social effects are more serious than those caused by epilepsy (which narcolepsy can be mistaken for)....

There are many opinions about the effects of Narcolepsy on one's life. We all have our own unique experiences and opinions. How does it effect your life? What area in your life that is effected by Narcolepsy do you find the most difficult to deal with?

I am really interested in hearing different experiences, and I would like to post some of them here, with your permission.

Well, everyone, have a great rest of the week, and oh yeah, have any of you seen the film "90 Naps a Day" yet? I got some interesting opinions from some of you who have seen it, and I hope to write a little about it soon. I haven't seen it yet, I am in the U.S, and I haven't found a way to see it, I have only been able to see some clips.

Scientists pinpoint genetic driver of narcolepsy

2008-10-02T18:26:00.004-04:00

Scientists pinpoint genetic driver of narcolepsy- click here for a link

I have been seeing quite a few news articles related to this genetic discovery in the past week.

Scientists in Japan have identified a genetic mutation linked to narcolepsy. I wonder what this means for the future of those with this disease, and finding a cure or alternative ways of treatment. Pretty interesting stuff!

On a side note, I have been sleeping approx. 15 hrs. a pop/day, for about a week. Today, I woke up, and felt like I had energy. I forgot what that felt like. I will NEVER take any energy or "good" days for granted! Oh what a great feeling it is to feel like moving, reading, working, shoot, doing anything!!

How are all of you doing?

This puppy was at the gas station, and I had to take a pic! What a cootie bug poo!!!

Upside Down Rainbows, in the midst of mayhem...

2008-09-19T05:29:00.004-04:00

WOW...

These past few weeks have been filled with mayhem, craziness, and odd happenings. So many things that have happened in the world lately have been devastating. From natural disaster to tainted products in China, hurting so many people. Please, don't forget, if you are a prayer-er (highly recommended here:)) to keep all of these people in your prayers, thoughts, and actions.

While reading the news today, I came upon, yet, another strange incident, but this time, it was beautiful, and a winner!

In the UK, Cambridge to be exact, a upside down rainbow was spotted, and captured by photo. Take a peek at the story here. Click here for the story and picture.

Wow. One commenter on the story mentioned "It looks like God's smile!". It is a beautiful thing.

Thanks God! I am sure that it really helped some people today. When I take the time to look at the beauty of nature, it seems to always put things back into perspective. I am so blessed. I thank God today for his mercy, and kindness he has given me. Again, I am so blessed.

2008-09-07T19:48:00.009-04:00

Sara Palin, Pro life my a!@!

How could someone who proclaims to be "pro-life" enjoy killing animals so much?

Check out these links. If you choose to vote in this upcoming election, make sure you are as educated as you can be about all of the candidates. We must know all that we can before we vote!

Maybe you aren't a vegetarian, but is it really necessary to have a dead bear to sit your butt on? If you had to kill it yourself, would you still do it? How could killing an animal be such a badge of honor? Sickos!!!!

Nice Bear you are sitting on Ms. Palin....real nice.

Polar Bears not as important as oil

Check out her offical bio, especially the pics!

90 Naps a Day...

2008-09-01T18:29:00.003-04:00

Hola peoples!

There seems to be a new film among us entitled "90 Naps a Day", a film by Firefly, exploring Narcolepsy. Click here for a link where I found this info, if you are interested.

I did a search, and cannot find any other info about this flick. Anyone know any other info about it? I would love to know more, or where I could see it.

I haven't written in a long time. I hope to be writing again, regularly now. Thanks to all of you that keep coming back and reading. I really appreciate it!!

Go Easy!

And Some People Think People With Narcolepsy are Dense!!!

2008-06-16T07:49:00.004-04:00

You know,

Narcolepsy can make a person forget words, slur words, mangle words...you get the idea, right? In honor of all of my brothers and sisters in Narcolespy, I bring something new! Well, I have decided to offers my readers, (all 2 or 3 of you...LOL), a weekly game entitled,

"Who Forgot to Put on Their Thinking Pants" quote game. Here's the deal...

I will leave you a quote, and you try to guess who said it. There is one important rule however...you absolutely cannot look the quote up...No Google-ing, no web search, just your fresh brain matter, and who you think may have said the monstrosity that I post. Got it? OK. And the first person to guess the mess will get the prize. Except unfortunately, there really is no prize.

Well, there is sort of a prize. You will be listed as the winner!!!! Woooo Wooo!

So here it goes, Here is todays funky funktabulus quote; remember, no cheating!!

Who Said This:

"One reason I like to highlight reading is, reading is the beginnings of the ability to be a good student. And if you can't read, it's going to be hard to realize dreams; it's going to be hard to go to college. So when your teachers say, read—you ought to listen to her."

Happy Guessing! This one should be pretty easy!!!

God Bless,
and Go Easy,
Ja

Narcolepsy, the Truth. Can You Afford Your Medication?

2008-05-25T20:39:00.003-04:00

Do you have insurance, but still cannot afford your medicine? Do you have Narcolepsy and can't afford meds?

I no longer have insurance, and barely afford medication that doesn't really do much for me anyway, but I think about all of the people, with and without insurance, that cannot afford medication that they need for an illness.

I just read a really crazy story about a young lady that is trying to afford Provigil for her diagnosed Narcolepsy, and it is just crazy what Cephalon, the makers of Provigil suggested that she do.

Just read the story for yourself. Click here to read her story. What do you all think about it? What is your situation? Any feedback?

Go Easy,
Ja

What do you do after you have tried everything?

2008-05-20T18:31:00.002-04:00

What do you do after you have tried everything?

When your health is getting worse, and nothing that you try works?

Narcolepsy is so tricky, and I guess just like everything else, what works for one person, may not work for another. Anyone out there with Narcolepsy, have any advice? I have taken Dexedrine for about 5 years now, with no increase in dosage. I worked full time, up until approx. one and a half year ago. First I went down to part time, then I was let go. I got the award for employee of the year! How could they just let me go??? Even after all of this time, it is like it happened yesterday. I guess my job was my life. It was the only stable thing I had.

I am sorry if this a a depressing post. I just am letting it out...the cats out of the bag. I am not the "together" person that most think I am, and I am at a loss when it comes to what to do. I lost my job, my apartment, my car. I work part time now.

I know I am blessed. I just am getting to the point where I cannot imagine living like this for the rest of my life. I don't want to die, I just don't want to live like this. I have been independent for most of my adult life. I think when one loses this independence, it can truly wreak havoc on your self worth, or your perceptions of yourself. I want to be a active part, a useful positive part of this world again.

I know God knows what is going on, I just can't figure out what he wants me to do...

or not do.

Bernadine Wade Marches On! Protesters March to Protect Children

2008-04-14T18:04:00.005-04:00

Nearly 130 gather to raise support for new law that would require monitors on school vehicles.

Click here to read the update on the story of the courageous Ms. Bernadine Wade, and her struggle to get the laws changed to protect our children! Ms. Wade, you and your family are in my prayers, and thank you so much for what you are doing!

Also, to keep up to date on her family's story, and what this is all about, click here to go to the family's website. This is an issue that we all can help and do something about. Please, check it out.

Photo credit: REPOSITORY SCOTT HECKEL

Press Release | Bernadine Wade The March to Protect Children

2008-04-04T08:05:00.002-04:00

Seven Year Old Girl Sexually Assaulted on a School Van in Ohio Leads Family and Activists to Join Together to Change Law North Canton, Ohio – March 11, 2008 – On Friday, April 11th, activists, parents, child advocacy groups, disability rights organizations, media personalities, clergy, community leaders, lawyers and others will convene in Ohio.

read more | digg story

Narcolepsy and the Presidential Election

2008-03-21T23:14:00.010-04:00

Have you ever had Deja Vu?

I will tell you, watching television this week, I thought that it was my Narcolepsy or Deja Vu, or something wrong with my head. I could still turn on the tube right now, and they would be yapping about "Obama's speech about Race". Didn't that happen at the beginning of the week??? I mean, the speech was phenomenal, but it is as if he gave it today, they are still analyzing each sentence, each phrase.

I thought I must be dreaming, but I guess I wasn't. It should be remembered, but how long are we gonna listen to these soundbites of it, and listen to each news personality give their opinions about what the frack he means...

Oh yeah, and what a great opportunity to invite all minority jounalists to the show to give their opinions too. I guess they only have opinions regarding things of a racial matter. Well, at least they are getting some airtime now, too bad it is only because of the current "race" commentary. How racialicious!

Anywho, I think if I hear another person say how "articulate" Obama is, I am going to puke from the mere ignorance of someone actually thinking that saying that someone is "articulate" is a compliment.

If someone said to you "you are so articulate", would you be flattered? Check out the definition of articulate, (from Dictionary.com) click to go there.

I will just list the first few definitions:

ar·tic·u·late [adj., n. ahr-tik-yuh-lit; v. ahr-tik-yuh-leyt]

1.uttered clearly in distinct syllables.
2.capable of speech; not speechless.
3.using language easily and fluently; having facility with words: an articulate speaker.

Hmm... You are so capable of speech! You uttered your syllables so distinctly. You are so fluent in the English language! Yeah...what a compliment. Give me a break. Oh yes, and Obama is "clean" or "clean-cut" too. As if we would expect a presidential candidate to be scraggly and smell like a bag of onions?

And please, can we just move along with the campaign? If the worst thing that we can find on Obama is that his Pastor says unfavorable things to some people about racial topics, wow...this guy must be pretty clean. Is that the best you can do???

P.S. I don't know who I am voting for yet.

P.S.S. Here are some other interesting conversations, articles, about this subject: Oh and this video is beyond funny...

Bush Criticized for Calling Obama "articulate".

Barack Obama is AWB: articulate while black.

Obama is Really an Atheist!?

2008-03-16T00:44:00.004-04:00

You know, If you have read any of this blog, it is apparent that I have Narcolepsy. So many people have said things to me like, "oh yeah, my cousin had that, and his doctor gave him a cure". Ok, no big deal. Sometimes, we, including myself, don't know what the heck we are talking about. When someone said the above to me, I said to them "no, there is no cure for Narcolepsy, maybe it was something else". I said this, trying to be nice, polite, whatever. They replied, "no, it was Narcolepsy, you should go get cured".

Stupid. People say things all of the time, without looking into what they are saying. Just like the deal with Barack Obama. I keep seeing people claiming that this man is a Muslim. I think to myself...So what if he is. But the fact is HE IS NOT...and no, the title of this entry is not true either. Barack Obama has said repeatedly that he is a Christian. All facts and historical information lead one to clearly see that he is telling the truth. But I wonder how many people just believe something, just because someone said that it was so.

This goes way beyond our news headlines or the presidential races. Think about your every day life. Do you believe something about someone, or anything just because someone says it is true? If you hear something that might make an impact on your life, or others' lives, do you check it out, or just go on spreading the information, not knowing if it is a fact, or not?

Read. Read more. If you are not sure, or it is a matter that is different depending on opinions, investigate, form your own opinion. Don't just rely on someone else's statement without being informed. Duh. And if you were wrong, just admit it. I don't know about you, but I think that a person that can admit that they are wrong without getting all bent out of shape about it, is a person of strong character. When I hear someone saying that "oops" they were wrong, sorry about that, etc. I trust them even more, and feel that that are a person that I can trust a little more.

So, here it goes...
Elvis does not currently work at a Burger King in Michigan.
Bill Gates will not send you money if you forward an email to ten people.
and no...that pill will not make you lose weight while you sleep...believe me, I've tried.

Please, hop on the clue bus...all are welcome.

Narcolepsy Makes Me Awake?

2008-03-15T04:58:00.002-04:00

It is now 4:03am. I am so awake. I just worked my bootie off, well, nope, it is still there, but really, I worked super hard, and I am mentally more alert than a...hmmm...look, I am just reallly awake.

Narcolepsy is funny like that. I think a lot of people just think that Narcolepsy makes people sleepy all of the time, and they can never stay awake. But I am here to tell you, that ain't so. Can anybody relate?

Well, I hope you all, who are reading this will have a great weekend.

Go Easy, and may God bless,
Ja

Dick Gregory is the Absolute Coolest Man on Earth

2008-03-11T18:48:00.005-04:00

I have always loved Dick Gregory; his analogies, his words of wisdom, his unmatchable charisma!

I encourage you to visit his website. Click Here to check it out.

Dick Gregory is truly a man of wisdom, and he teaches and shares his wisdom with such a humor and straightforward approach. When I hear him speak, I find myself laughing at his cleverness, and then crying because of his sincere truthfulness.

Dick Gregory once said, “Once we used to have to crank up our cars, now you can pop it on from inside your house. Everything has changed except how we get freedom.”

Today, I just wanted to thank God for Dick Gregory, and thank you Mr. Gregory, for sharing your light and love so generously!

Xyrem, and Jazz

2007-07-18T02:49:00.001-04:00

So....What do you people think about this lawsuit against Jazz Pharma? I tried taking Xyrem at one time and I think that it was probably the scariest time in my entire life! I am glad that it has been such a blessing to so many with Narcolepsy! It just wasn't for me.

just a cartoon I appreciated....sorry about the quality...

Is it just me, or is this kinda not new info - "Narcolepsy May Be Caused By Environmental Exposures"

2007-01-10T13:27:00.001-05:00

There is an article recently published by The American Academy of Sleep Medicine entitled "Narcolepsy May Be Caused By Environmental Exposures". It has been posted on many websites, and blogs lately.

While I find this article interesting, I just keep saying to myself "what is really new about this information"?

Maybe someone out there can tell me, but this article just seems like it is non-conclusive, and keeps the "environmental cause" of Narcolepsy, still as a possibility. Didn't we already know that?

I guess I was just hoping to read this article and be presented with some new discovery about Narcolepsy, instead of just "mights" or "maybes".

Anywho, I guess it is an interesting read regardless. Here's the link to the article, for those of you who would like to check it out. Also, if any of you have opinions regarding this article, please leave a comment. I would like to know you thoughts.

Here's the link.... Narcolepsy May Be Caused By Environmental Exposures

This is my cool dog. Just thought you might wanna know.

On a different note...
Do any of you out there take or have you even taken Ambien, to aid in sleeping? I am taking it, off and on, and while it does make me fall asleep fast, I seem to have so much tension in my neck and jaw. I already have these problems, but it seems like it has been worse when taking the Ambien. Anyone have opinions, or info/experience with this?

Thanks all for reading, and I hope everyone has a great rest of the week!

Go Easy,
Ja:)

Why Me? Depression and Narcolepsy - What I Have Learned

2007-01-08T16:41:00.001-05:00

Why me?

Have you ever thought this, or said these two words?

I am a person who has Narcolepsy. When I was diagnosed with Narcolepsy, at first, I felt so much relief. I felt like finally, I know what it is! Finally, I knew why I fell asleep so many times when it wasn't normal. I knew why I couldn't focus on one thing for very long. I knew why my knees would buckle, and why all of the sudden I just couldn't talk! Wheew. After 14 years of wondering what the heck was wrong with me, I'm not crazy, or lazy, I just have Narcolepsy! WOOHOO!!!

And then came the hurricane. Why me? Why me? Why didn't the doctors test me for this 10 years ago? Why didn't they listen to me? Why did they just say "you have depression, that is why you are so sleepy." And all of the people in my life, they got so mad at me. They told me I needed to get more sleep and eat right. I remember people telling me everything from how selfish I was for not doing things that I should have been doing, to someone asking me if I had a drug problem. errrrrrrr. I got so mad. Mad at the whole world! Mad at God for giving me this illness!!

Today, thank God, I am not mad anymore. Ok, I admit, I still have my "not so pleasant" moments, and sometimes I do feel depressed, but I stopped blaming other people for just simply not knowing. I stopped the inner hate that I had for myself for not being able to live up to other people's standards. I started living again. One thing that helped was finally admitting to myself that I have Narcolepsy. I have limitations. I still am working on that one, but I learn more each day.

The really strange thing is that even though Narcolepsy is not my friend, it has been my teacher. I don't believe that God wants anyone to be ill, and some illnesses are caused by the way we care or don't care for ourselves. I don't know why I have Narcolepsy, but I don't think about as much anymore. If I ever start thinking about how bad I have it, it takes just a few minutes to remember how much worse it could be and how many other people in this world have so much less than I do. So many people suffer with so much, and I know that I am so fortunate.

I have learned that having an illness that is not easily visible to the eye is not easy. I have learned that someone telling me that they care and that they understand means more to me than anything anyone could ever say to me. And here's a little tip, If you ever want someone to know you really care, flowers and gifts are nice, but telling them is by far the most incredible, healing gift anyone could ever give and receive!!

I now feel that my illness has allowed me to relate to others with more compassion and empathy. And let me tell you, when I have a day that I feel awake, I mean really alive, I appreciate that more than you could ever know.

I ain't gonna lie, I do have day where I don't as if I really want to live. But, at the same time, I certainly don't want to die. I just want my life to be different, and I know that that is something that can only come from within.

I drive, I live independently. I can care for myself, and I am free make my own choices. I am not sick, and I am not crazy or lazy. I am blessed. I am not only a survivor, I am a conqueror!

Of course, if I had the chance right now to get rid of this Narcolepsy, I would jump and jump and jump at the chance to be Narcolepsy free!! But until that day comes, I thank God for everything that he has taught me, and teaches me from having Narcolepsy.

If you have gotten this far in reading...Thank you. I just want you to know, whoever you are, you can find good in the rough things in life. God loves you. There is a reason for everything...just do your best to use it all; It is a struggle, and we are all human, just do your best, change it around and turn it into somethin' good. You are loved. You are a living, breathing, human being. You have a purpose, and life is the journey in which the many purposes unfold.

Go easy,
Ja:)

Terrible Accident, "Miracles" Found!

2006-01-02T23:55:00.001-05:00

Weeks ago, I posted a story about a man named Steve Litzkow, who uses a horse and buggy because of his illness, Narcolepsy. He was tossed from his horse and buggy by a hit and run driver. He was seriously injured, his buggy was in shreds, and most sadly, his horse was killed.

While he was recovering, another family donated a new buggy for Mr. Litzkow. It was a beautiful thing! Please read my earlier posts about this story for more details if you are interested.

So many people since then, have stepped up, and helped Steve. What I think is the most incredible part of his story is the way that he has responded to this whole tragedy. Click here for the latest follow up article from the East Central Minnesota Post Review website. You won't regret it!

This is a a tragic story that Steve Litzkow has turned into a story of blessings, and a perfect example of how a person can find miracles in the most unexpected places.

Thank you Steve Litzkow, for reminding me what life is really all about.

Your Limitations Are Not Weaknesses!

2005-12-18T13:30:00.001-05:00

With me having Narcolepsy, one of the biggest struggles is accepting my limitations. At first, it was knowing what my limitations were. Now it is accepting them. In a world where most people have no idea what is going on with you, by having Narcolepsy, it makes it more difficult; for me anyway.

When you can't wake up, and are late to work. When you fall asleep while talking to someone on the phone. Things like this I am sure make it really hard for people without Narcolepsy to understand why these things happen.

Now, to be honest, some of these things that happen, I just do not have control over them. But some of them...I do. If I am not doing everything that I can to take the best care of myself, then these things can become worse.

Knowing your limitations, and adhering to them are two very different things!

Sometimes I will stay up way too late, because I feel awake and can do things that I want to do, and then, the next day, I pay the price.

Your limitations are not weaknesses. Everyone has limitations. You and only you know what your limitations are.

On the other side of the coin, Never let other people decide your limitations or capabilities.
There will always be people who will say you're not good enough, smart enough, healthy enough, etc. to accomplish your goals. Don't listen. Remember, you can accomplish anything you set your heart and mind to accomplish! Just do it in a way that doesn't exhaust your resources.

Know and adhere to your own limitations!

The Effects of Sleep Deprivation

2005-12-16T05:15:00.002-05:00

Hola all!

Any of you feeling sleepy? Even if you do not have a medical condition that may contribute to poor quality sleep, or lack of sleep, sleep deprivation is so common in our fast paced, get it all done now, society.

Do you know how sleep deprivation can effect you? So many people don't realize just how important sleep is to your well-being. Fact is; you gotta sleep. You cannot survive without it. Here are some of the effects that sleep deprivation may have on you!

Sleep deprivation can cause:

Depression: This is common sense, isn't it? When you don't get sleep, you feel like crap. If you consistently don't get your Z's, you feel like crap everyday. And then, the grand prize for your efforts...Depression!

Heart Disease: Yes, it is true. Regular sleep deprivation can cause heart disease. Don't believe me? Look it up for yourself.

Difficulty with social relationships: This is another one that just is easy to figure out. When you are sleepy, you don't really feel like being the life of the party, or even thinking about any kind of party. With continued sleep deprivation, social relationships can become severely damaged. Isolation is just natural when you feel so tired. It is also common with depression too.

I am not trying to depress anyone reading this, so I will tell you, there is something that you can do!!

Relaxation techniques, pain management, exercise, and avoiding caffiene and alcohol are just some things that you can do for starters on your own. Sometimes though, these things are just not enough.

If doing your best to create the best sleep that you possible can does not prove to be successful, you may have an underlying condition causing a problem with your sleep. If at all possible, this is the best time to see your doctor, and discuss your symptoms to see if you may have a sleep disorder, or another condition effecting your sleep.

OK, people I know this may sound like some public service announcement, but it is really serious! For more interesting effects of sleep loss, check out these following articles. Some of them are amazing, and some are just plain scary!

Sleep Deprivation: Causes and Consequences

Sleep deprivation as bad as alcohol impairment, study suggests

Brain Activity is Visibly Altered Following Sleep Deprivation

Scientists Finding Out What Losing Sleep Does to a Body - This one is scary!

Ok, why are you still here? Go get some sleep!

Man With Narcolepsy Receives New Horse Buggy After Crash

2005-12-10T00:41:00.001-05:00

On Friday November 25th 2005, A man was hit by a car while in his horse driven buggy, and the person that hit him did not stop at the scene. The full story can be found here.

Steve Litzkow, was the man driving the horse and buggy. He suffered a broken vertebrae and ribs, and his horse was killed by another driver. So not only was this poor man hurt severely, but he also lost his horse, and his only transportation; his buggy.

When I first read this story, I felt so sad for this guy, and for his losses. In the article, I could tell that the horse wasn't only part of his transportation, but also his companion. The police were looking for the 18 year old man who caused this accident, and I was glad that they seemed to know the identity of this criminal.

Reading this story also reminded me of how fortunate I am. I have Narcolepsy, and still am allowed the privilege to drive a car. Wow! I can't imagine how difficult it would be driving a horse and buggy during the winter months, or any season for that matter. And I imagine that this man feels thankful too. To be able to just wake up in the morning, with shelter, is such a blessing! People, I am so blessed! Thank you God!

Sleep Disorders effect everyone differently. Sleep Disorders may not be easy to see with the eye, but they can be devestating.

Today, I found an update on this story, which is a happy one, because of the kindness of a stranger in this mans community. The following story was published at the website for Channel 5 eyewitness news in St. Paul, MN, on Dec 1st. You can read it there to, just click here.

From the Channel 5 Eyewitness website:

The Wisconsin man whose buggy was hit and horse killed last week is getting a new trailer from a sympathetic stranger.

Steve Litzkow was hit Friday evening by an 18-year-old driver traveling at 50 miles per hour. He suffered a broken vertebrae and ribs, and his horse was killed by another driver.

Cliff Larsen is giving Litzkow a new buggy that he did not have the opportunity to use."If something good comes of this, if something good comes of something bad, we're all winners, aren't we?" said Larsen.

Litzkow watched from his kitchen as the buggy was delivered. "It's just wonderful. I can't believe this," he said. "It's just unbelievable."Litzkow drives a horse and buggy to get around St. Croix Falls, WI because he suffers from narcolepsy, a condition that causes him to fall asleep suddenly.
---------------
My prayer go out to you Mr. Steve Litzkow, and I pray that you have a quick recovery. Thank you Mr. Cliff Larsen, for your kind act, and also reminding us that kindness is still alive in this world!

I know that the world can seem so cold sometimes. People can seem cold, and careless. But there are still people out there that care, that want to help others.

We have got to be those kind of people! Remember, one little kind act to you, may be the biggest gesture of love to someone else!

Update: According to twincities.com, Mary Linehan, an organizing member of the Taylors Falls Lighting Festival, said she will open a fund Monday to benefit Steve Litzkow, using money from the recent sale of her own horse to get the fund started.

Donations can be sent to: The Steve Litzkow Fund, c/o The RiverBank, 2183 U.S. Highway 8, St. Croix Falls, WI 54024.

To view this info, and the story from the twincities.com website click here.

Myths and Facts About Narcolepsy - With a Little Personal Experience Added For Good Measure!

2005-12-07T02:28:00.003-05:00

It's time to get to the facts! There are facts about Narcolepsy, and there are Myths. Let's see if we can make some of the facts about Narcolepsy clearer.

No, I am not like one of the characters in the movies "Rat Race" or "Deuce Bigalow".

I have Narcolepsy.

You will not find me standing in the middle of somewhere asleep.

No, it is not contagious.

I know that I had practically no real knowledge of what Narcolepsy was until in the process of being diagnosed with "whatever it was" that I had. It took 14 years to come to a proper diagnosis.

Today, I would just like to give you all a few important facts about Narcolepsy, as well as clear up some of the myths. So, stick with me, don't fall asleep, and read on!

First let's start with the basics:

Narcolepsy is a chronic sleep disorder with no known cause. The main characteristic of Narcolepsy is excessive and overwhelming daytime sleepiness, even after an adequate night's sleep. A person with Narcolepsy is likely to become drowsy or to fall asleep, often at inappropriate times and places. Daytime sleep attacks may occur with or without warning and may be irresistible. These attacks can occur repeatedly in a single day. Drowsiness may persist for prolonged periods of time. In addition, nighttime sleep may be fragmented with frequent awakenings.

This is a very basic description of what Narcolepsy is. There are so many other "classic" symptoms that can occur with Narcolepsy, and I will discuss those further in other posts, but above is a very basic idea.

So now, on with the Myths!

Myth # 1 Narcolepsy effects each person in the same way.

This statement could not be any further from the truth! Each person is effected differently. Some will say that their worst symptom is daytime sleepiness. Others will say that Cataplexy, (which I will talk about more in the future) is the most debilitating symptom. Among all of the symptoms that can occur with Narcolepsy, some will have all of them, and others, maybe only a few. Some people's symptoms will be very severe, while other will only have mild symptoms. Each person is different.

Myth # 2 If people with Narcolepsy would just get more sleep, or go to bed earlier, they would be ok.

NOT! I know that sometimes, when a person has an illness that is not easily seen by simply looking at them or talking with them, it can be difficult for one to actually realize, or believe that they are really ill. With Narcolepsy, the amount of sleep is not the problem; it's all about the quality of sleep.

According to JEROME M. SIEGEL , professor of psychiatry and a member of the Brain Research Institute at the UCLA Medical Center. "People who are not narcoleptic begin their nighttime rest with non-REM sleep, with REM sleep following roughly 90 minutes later. But narcoleptics frequently go straight into REM sleep. Because of this trait--and because narcoleptics experience loss of muscle tone and dreamlike hallucinations that normally occur only during REM sleep--researchers have hypothesized that these symptoms of Narcolepsy result from the inappropriate triggering of some aspects of REM sleep."

So in layman's terms; People with Narcolepsy have sleep cycles that usually are quite screwed up. This being true, Narcolepsy can cause a person's sleep quality to be extremely poor and non-refreshing, regardless of the length of time they sleep. Let me just say, I could sleep 20 hours, and might wake up to feel like I never slept. Again, everyone is different, and each day is different too!

Lastly, for now, so I don't put anyone to sleep,

Myth # 3 There is an established cure for Narcolepsy.

Research being done today for Narcolepsy looks quite promising, but, currently, there is no cure for Narcolepsy that has been found....yet. There are many different medications used for treatment, and many people do well with these therapies. I have even heard of some turning to alternative medicines to treat Narcolepsy, with some positive results. Again, everyone is different.

I know some people with Narcolepsy that work full time jobs, with a family and even actually have extracurricular activities. Others that I know are in wheelchairs, or a full disability income, and cannot work at all. And then there are the many others in between.

Remembering that we are all different is a key element. If you know someone with Narcolepsy, or have it yourself, it is a waste of time to compare them (or you) with someone else who has this illness.

If you know someone who has Narcolepsy, and want to know more about how they feel or are effected by this illness, then why don't you just ask them? They are an expert. They know themselves and how they feel, better than you or anyone else, just like you know about you better than anyone else. If the person wants to share knowledge with you, you will most likely gain a wealth of information, and a better understanding of the person themselves.

I have Narcolepsy. People who ask me questions and don't just assume they know how I feel or how the illness effects me are a breath of fresh air! People like that make me feel accepted. It feels like they really do care.

Click Here to go to the first page of this blog - "The Adventures of a Sleepy Woman".

The Adventures of a Sleepy Woman...Who Happens to Have Narcolepsy.

2005-11-30T03:10:00.001-05:00

Welcome!

My name is Ja, and I have Narcolepsy. It is my intention to create a blogspace that will inform you, assist you, and yes, maybe even humor you about all things Narcolepsy! Also, I wish to inform the masses about other sleep disorders, and the myths and facts about sleep, itself. Many people
think that Narcolepsy is a very rare disorder.

Actually Narcolepsy is not that rare. Narcolepsy is unrecognized and underdiagnosed condition. Many people are misdiagnosed for years! It took 14 years and countless diagnoses for me to find that I did in fact have Narcolepsy.

It ain't no walk in the park! The ups and downs of Narcolepsy can effect every area of one's life. I hope that this site will help anyone who wants more information about Narcolepsy, and also I hope that it may help in some way when times get tough!

So please, help yourself to the info and experiences that I will provide. Life isn't easy, even if you don't have an illness! Lets make life a little easier, for all of us.